CDC has alternative therapies listed as suitable treatments on their website

[Hope123]

I think they are included in "Pharmacologic Therapy"

Antivirals and immunomodulators are not mentioned anywhere on CDC site.

I agree with SOC that the CDC is biased in their selection of evidence and what they choose to highlight on the site.
In fact, some of the stuff cited is drawn from FM and chronic fatigue studies and not CFS. Some people with CFS have FM but they are not the same illness.

 

[eric_s]

But antivirals and immunomodulators are pharmacological treatments, aren't they? "Symptomatic Treatment" and "Orthostatic Instability Treatment" are equally broad (what is "orthostatic instability" anyway? was that a typo? or did they not want to say "orthostatic intolerance" for whatever reason?).

I don't mean to defend the CDC CFS website and i agree that it's bad.

 

[Hope123]

But antivirals and immunomodulators are pharmacological treatments, aren't they? "Symptomatic Treatment" and "Orthostatic Instability Treatment" are equally broad (what is "orthostatic instability" anyway? was that a typo? or did they not want to say "orthostatic intolerance" for whatever reason?).

I don't mean to defend the CDC CFS website and i agree that it's bad.

Yes, they are pharmacological treatments but no, the CDC doesn't seem to view them as pharmacological treatments for CFS. I'm correcting you because not everyone is going to look through the site and I like accuracy when it comes to things like this.

 

[eric_s]

Do you know they are not included there? And if they are not, what is included then?

 

[SOC]

Just go to PubMed and do a search Weaselly and co should have at least 1/2 of the papers that show up when a search is preformed. That's the research to support the majority of the list. It's also what helps ensures that their will never be enough so called "research to support" many of the things we would like to see listed.

Oh, I thought they were looking for scientific evidence.

 

[taniaaust1]

Hi Tania The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.

can be found at the bottom of this page http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

I put that statement from the CDC onto wikipedia (worldwide one) the other day with the CDC link but it got taken off the page with the reason given for the removal "controversial". Hows that for biased!.. (its a complete breach of the wiki rules which say things have to be unbiased).

I also started to put on that page too, other CFS treatments (currently just GET and CBT are really written about there) but that post of mine (the whole thing!!) was removed to on the grounds (I did include a backing reference) of "no origional research" .. I guess I need to include more references to what I stated.

If anyone needs any advice on how to post on the world wide wikipedia ... feel free to ask me and I'll help explain things if I can.

 

[Cort]

It is better but look at the emphasis - three psychological treatments are first - although antidepressants are last on the list - strange! If therapy is first - then antidepressants ought to be higher logically I would think. Actually drugs like klonopin are used much more than antidepressants.

No antivirals, no pacing oddly enough even though they list sleep hygiene - there are odd gaps here which makes me wonder how much thought was placed in this.

Professional Counseling
Cognitive Behavioral Therapy (CBT)
Graded Exercise Therapy (GET)
Symptomatic Treatment
Alternative Therapies
Support Groups
Pharmacologic Therapy
Sleep Hygiene
Pain Therapy
Orthostatic Instability Treatment
Antidepressants"

 

[Sallysblooms]

Yes, I agree with Cort, I have no idea why some things are even on the list. Guess which ones, ha.

 

[Ember]

How the CDC is fooling the ME community about their views (allowing most to think they see it as the same thing) and continues to do so, really bothers me. We dont need CFS removed but rather need ME clearly defined by them so we can show their page to our doctors etc etc and hence get our diagnoses just changed. Nearly all the CFS studies havent been properly done due to all the mix of patients groups watering results down. We need ME studies.

Patients in the US don't feel they can afford an ME diagnosis, Tania. As far as I can see (as an outsider looking in), it's all in the hands of the insurance companies.

What is the relationship between the CDC and the insurance companies? Apparently the CDC will need at least a year to collect data from their clinical colleagues and possibly engage "people that do not actually have contracts" to discuss with them the process of revisiting CFS-Fukuda. According to Dr. Unger, the CDC implements what the committees and the recommendations are. A meeting of experts will be prefaced by committees and pre-meetings, posting and comments, discussion and dialogue because everybody needs to have a voice in what the final product is.